Battle for Blood

Published 8:00 pm, Thursday, October 21, 2010

Karen Pallas, of Bad Axe, poses with her daughters, Lauren,12, and Tori, 9.

Karen Pallas, of Bad Axe, poses with her daughters, Lauren,12, and Tori, 9.

Battle for Blood

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By Kate Hessling

Tribune Staff Writer

BAD AXE — In 2007, Karen Pallas was in her mid-30s and physically fit, as working two jobs and raising her two children kept her very active.

So she wasn’t surprised that year when her feet would hurt at the end of a long day. But then the aches worsened to the point she was living in pain every night for an entire year.

“I thought it was because I was working too much,” said Pallas, of Bad Axe, and formerly of Argyle.

In November 2008, she saw a local doctor and after a slew of tests, the doctor was unable to determine what the problem was. So Pallas was referred to Harper Hospital for a series of testing. Still, no answers were found. She then was referred to the University of Michigan in March for additional testing and consultations.

By this time, the doctors determined she was suffering from an unknown diagnosis that is attacking her nervous system and causing paralysis.

The paralysis began in one foot and progressed at a rapid pace, as she now is completely paralyzed from her toes to her knee caps in both legs. And she’s starting to lose feeling in her hands.

“They (the doctors) said in anybody else, it doesn’t progress this fast,” she said. “(In) somebody that has something like this … it usually takes 10 years to lose mobility and limbs. It only took me a year and a half to completely lose feeling up to my knee caps.”

Dr. Richard Lewis, professor and associate chair of Neurology and co-director of the Neuromuscular Program at Wayne State University School of Medicine, explained Pallas has had a progressive peripheral neuropathy that has been very difficult to characterize.

“Peripheral neuropathies are disorders in which there is damage to the nerves in the arms and legs which send the signals to the muscles to contract and sensory signals to the central nervous system to provide feelings that enable us to function,” Lewis said.

There are many causes of neuropathy, the most common being diabetes mellitus, he said.

“However, despite being seen by physicians who are experts in diagnosing and treating peripheral neuropathy, Karen has not been found to have any of the disorders most commonly linked to neuropathy, nor have we been able to prove that she has an inflammatory condition,” Lewis said. “Her disease has progressed in a fairly aggressive fashion and it is imperative that we attempt to slow the progression of the disease.”

As a result, doctors are treating Pallas for the most likely disorder that can cause this aggressive neuropathy: Chronic inflammatory (demyelinating) polyneuropathy (CIDP) using intravenous immunoglobulin (IVIg), which is a blood product containing immunoglobulin G pooled from many human donors.

The treatment consists six sets of transfusions. A set consists of one-hour transfusions for five consecutive days. Each transfusion is about $10,000.

“In the meantime, we will continue to look for the specific cause of her neuropathy,” Lewis said. “We would like her to be seen at another neuropathy center (Johns Hopkins, Mayo Clinic), but insurance issues have made this difficult. We are hopeful that we can prevent further worsening. She has dealt with this unfortunate condition with great patience, but is understandably frustrated and upset by the relentless progression.”

Pallas said she needs to go to the Mayo Clinic in order for them to determine a diagnosis so her insurance will pay for the treatment.

Medicaid misery

Unfortunately, some of the insurance issues Lewis referred to is the fact that the Mayo Clinic does not take Michigan Medicaid, Pallas’ insurance.

“If I had any other insurance, I could have walked through the door,” she said.

Pallas’ friends and family began collecting donations over the summer, and various jars were put in a number of businesses around Huron and Sanilac counties asking for donations. A benefit poker run then was held September in Ubly.

Those donations and benefit proceeds helped pay for a biopsy taken by U of M that was sent to Mayo. While Pallas and her doctors were awaiting the results from the biopsy, Pallas said a miracle happened last week: She got a call from Medicaid saying the IVIg has been ordered and shipped to a local pharmacy.

The insurance company agreed to pay 80 percent of the IVIg, and Pallas was ecstatic.

But then, on Tuesday, she was informed while the insurance company would pay 80 percent of the IVIg, they wouldn’t pay to have the actual transfusion done. And health care providers said they couldn’t perform the transfusion if the insurance wouldn’t cover it.

“They won’t pay to have it done, even though it (the IVIg) is right here,” Pallas said. “The insurance company had my blood (IVIg) here, but they won’t pay for me to have my intervention. Everything is at the hospital, but they won’t pay for a nurse to perform the transfusion. Nobody (locally) wants to touch it because nobody around here has done it.”

Pallas was devastated, and her family was livid and immediately began contacting lawmakers.

“Here it is sitting up town and I’m going paralyzed, and it’s sitting here and I can’t have it done,” she said. “I’m fighting to get a blood transfusion — somehow.”

When State Rep. Terry Brown learned of the situation Tuesday evening, he said it doesn’t make sense to have Pallas’ condition deteriorate when there’s a treatment available.

On Wednesday, he and his office contacted federal representatives and officials from the Michigan Department of Community Health, who currently are working to address the problem.

“We are committed to finding a way to get it done,” said Brown, a Pigeon Democrat.

Now, at the age of 40, Pallas uses a cane to get around, but her biggest fear is that her condition will worsen to the point where she will have to live her life in a wheelchair. She regularly goes to physical therapy to keep her thigh muscles strong in efforts to delay having to live in a wheelchair.

But physical therapy is not nearly as effective at slowing the progression of the disease as IVIg, which has treated many individuals who have had similar neurological diseases, including CIDP, who previously were confined to wheelchairs but no longer are because of that treatment.

Brown said it doesn’t make sense to not pay for the treatment, even if it is upwards of $60,000, because it potentially could cost the state a lot more money if the treatment is not given and Pallas needs lifelong assistance because she is confined to a wheelchair.

The cost also would be dear for Pallas and her family, he added.

“The community outpouring of generosity is a testament to how important our getting the treatment for Karen is,” Brown said.

Spaghetti luncheon benefit set for Sunday

Family, friends and community members are coming together once again for Pallas, this time for a spaghetti luncheon benefit from 11:30 a.m. to 3:30 p.m. Sunday at St. Joseph Hall in Argyle.

The benefit will feature a 50/50 raffle, bake sale and live auction of more than 150 items, some of which were donated because of the hard work of the owner of East Side Party Store in Bad Axe. Items that will be auctioned off include a $60 basket of products from the Cutting Connection in Bad Axe, pair of Detroit Lion football tickets, 1950s Tru-scalp Toy pull type combine antique tractor valued at $125, truck bed from Thompsons Chevrolet-Buick, one-night stay at the Holiday Inn Express in Bad Axe, multiple mirrors and signs from Smith Distributing, and gift cards from a wealth of businesses, including Marks Barber Shop, Main St. Cafe, Envisions Photography, Hair Shop, Samuel Mancinos, Bronze & Beauty, Graff, Ball Equipment, Pizza Hut, The Peppermill, All Season, Gillis Hotel, Buds & Blossoms, Tubbs Brothers, Super Tan, North Country, Klee’s Florist, Ubly Village Mini Market, Ubly Subway, Weltins Meat Packing, Sandtown Florist, The Gathering Place, Cousins, China King, Verona Tavern, Moments Captured by Vanessa, Interior Home-Ashley Furniture and Cross Roads.

Benefit-goers will be able to meet Pallas and her two daughters, 9-year-old Tori and 12-year-old Lauren. Pallas’ parents, Bud and Sharon Pallas, of Argyle, also will be there with other family members and friends who have helped collect donations and put on the benefit.

Take-outs are available at the benefit, and anyone who wants more information can call Tracey at (989) 658-2598.